We are having a good week. Parker isn’t all that thrilled to be here and he is short tempered but he is doing the best he can.

Sunday night we had our sleep study. That’s where he sleeps like a champ even while hooked up to ridiculous amounts of leads and monitors and I freeze all night because it is like a refrigerator in the room.

We don’t have the results yet but from what I saw (and I looked a lot on account of the “no sleep” thing) his o2 sats were great and his co2 looked fine too. So, I don’t expect any weird news from the sleep study.

Monday we went to voice clinic and ENT clinic. Today we went to pulmonology and GI clinics.

Why are we here? Why so many clinics?

Partially this is routine follow up. For the forseeable future we will need pretty routine follow up on the reconstruction surgery that Parker had two years ago. Hopefully sometime soon we will graduate to a “come back in a year” schedule but we will know more on Thursday.

Partially this is follow up from a bunch of things that were a little bit “off” from the last routine visit. For starters there were some signs that Parker was having some reflux and/or microaspirating. There was some very, very mild lung damage and cobblestoning of the surface of his eosophagus. These were all new symptoms for Parker. So he was put on an acid reducing medicine. When he goes into the OR on Thursday they will be looking to see if the damage is still there and if it is better or worse.  Reflux is one of the bigger risks associated with a failure of the reconstruction surgery that he had. So it is important to keep it at bay to minimize the risk of needing to have the surgery repeated.

They will also be taking some biopsies of his eosophogeal tissue and placing an impedence probe. The probe will be in place for twenty four hours and is a highly sophisticated way to measure the incidence of reflux. It also measures the pH level and tells exactly where each incidence of reflux makes it up to.

The other big issue at play is that about three months ago we started noticing some change in Parker’s breathing. It wasn’t dramatic and it wasn’t consistent. But, over the last few months we’ve noticed that several times a day he has some periods of time where it sounds like he is having increased work to breath in his upper airway. He isn’t stressed or bothered by it, on the contrary he seems totally unaware. The episodes appear to be no rhyme or reason to them but they have gotten more dramatic in nature and more frequent.

Top theories at this point are: paradoxical vocal cord movement (times when Parker’s cords spontaneously do the opposite of what he is telling them to do), reflux incidents that reach the vocal cords causing some kind of temporary reaction, edema caused by allergy, and finally structural change in the upper airway.

Every doctor has a theory or two and everyone agreed that the only way to really know was to get in there on Thursday and take a look. So, all three doctors will be in the OR looking and putting together a hypothesis. We are, of course, hopeful that what they see is not structural. In truth there could be several things at play here! We are fortunate that he has become symptomatic at a time when it was previously planned that we would have all three areas of expertise present in the OR at the same time. All three doctors routinely consult and work together on the multi-disciplinary team at the hospital which is always a good thing for patient care.

Tomorrow is our free day. Grandma is coming for the day. Not sure what our plan is yet as it is supposed to be 95 degrees here!! 

Thursday morning is our scheduled OR time! It is much later than we are used to. Should be interesting to see how Parker does with the whole “no eating” thing!

2 Responses to “Tuesday!”

  1. 1 Nikki September 23, 2010 at 1:27 am

    Wow, Suzanne — you sound like a doctor yourself. 🙂 What a great thing that all 3 specialists will be able to look at Parker on Thursday!! Praying for them NOT to find anything structurally wrong, but something fixable/treatable. I’ll be watching for the next update.

  2. 2 Pam Crabtree September 23, 2010 at 1:56 am

    Good luck tomorrow, Suzanne!

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